Living fearfully in the shadow of dementia

the people most affected by dementia are those who care for the affected. relatives can find it very hard to see people they love deteriorate.

Perhaps each one of us must ponder over our own onset of dementia. There is a sense of final resting about death, while dementia is a raging travesty of human dignity.

Mr George stands in front of his house from morning to evening and looks at people passing by. He greets me every morning, always with a smile. He is growing a mustache these days. The rest of his face is clean shaven, except for patches the razor forgot where clumps of hair grow like occasional cacti. The effect is ill-kempt.

He asks me my name, every day. I tell him. He then enquires after my family, where I work and where my kids are studying. I tell him in the minutest detail. I’m not always this patient though. Sometimes I walk away with a smile. He wasn’t always like this. He used to be my teacher in mathematics, a brilliant man.

Mr George is disabled. He has senile dementia. He doesn’t know who I am, he cannot remember anything I say. If you and I live long enough we might become like Mr George. Up to 50 per cent of people above 85 show symptoms of dementia, with loss of intellectual faculties, including the ability to remember and concentrate. The first symptoms are loss of short-term memory which usually slowly progresses.

There are many kinds of dementia. In the senile kind, brain cells lose their organisation and communication. In Alzheimer’s disease abnormal proteins are laid down in the brain, severely affecting function. Dementia is also caused by brain tumours, drugs like alcohol and vitamin deficiencies. In these latter types damage to the brain may be reversible.

It is often said that the people most affected by dementia are those who care for the affected. Close relatives can find it very hard to see people they have love deteriorate before their eyes. Characteristics which made the individual unique are lost one by one until she is reduced to a life system dedicated to mere existence.

Dementia is no respecter of persons. George Fernandes is one sufferer. Ronald Reagan was another. Sugar Ray Robinson, one of the most famous boxers of all time, and the actor, Rita Hayworth, are on that list.

But suffering is not restricted to caretakers. In the early stages of the disease the patient is aware of his plight.

Short-term memory loss grows from mildly annoying to disabling. The sufferer loses his way in streets he has known all his life. He forgets where he has placed things. He cannot remember new faces or names. Old habits like reading are no longer possible. There is tremendous sadness. And as one by one the doors of memory shut down, old childhood fears are rekindled and resurface as panic reactions to normal stimuli.

But it certainly is hard for caretakers. It is difficult looking after regressing adults. We care for our children tenderly. Children can be tough, but they have promise. A child is an adult in the making, a whole life before her. She has something to deliver. The old man or woman walking off into the sunset is never a promise to the rest of us. The promise is over, perhaps it has been delivered, perhaps not, but the old duffer has been there and done that. He has nothing to look forward to, except an eventual death. Until then he will repeat questions, make foolish mistakes and passes urine and stool wherever convenient. We think of even the worst behaved children as cute. But cute would not be our word to describe an old man singing nursery rhymes at the top of his voice at two in the morning.

The present state of medical care for dementia is depressing. Conversely we have learnt how to cure or control many of the ills that ail the body. Our life spans keep increasing. Never before in our history have we lived so fearfully in the shadow of dementia.

We have tried to understand this enemy. We know that there is often structural damage in the dementias as evidenced in the MRI scans as a smoothening of the normal convolutions of the brain with ageing, a loss of brain volume and abnormal proteins described as plaques and tangles laid among normal brain cells. Neurons lose rigid organisation and break free, and what we think of as the mind — the brain in action — changes. The brain becomes a bundle of independent neurons and the mind vanishes.

But the body moves on. The body still remembers how to walk and talk, how to eat and how to excrete its wastes. It remembers how to heal itself. It retains its remarkable capability to maintain homoeostasis, which distinguishes a living system from a dead. Homoeostasis is the maintenance of a conducive environment for life processes to work within hostile territory. The pH of blood is maintained at 7.35, blood sugar between 80 and 120 mg per cent and blood pressure at 120/80 mm of mercury. The organism lives on in the midst of dementia.

My grandmother lived on for four years after becoming totally demented until she forgot how to eat. During that time she sustained two major fractures in her shoulders which healed by themselves. She wouldn’t tolerate a sling. She kept moving her shoulders and cried from the pain. The pain would subside after a while and she would forget about it and move the arm again. Both fractures mended in a month. The body remembered to heal even when the brain had lost all memory.

Perhaps each one of us must ponder over our own coming dementia. This is even more difficult to envisage than our deaths, for death has a certain melancholic heroism. There is a sense of final resting about death, while dementia is a raging travesty of human dignity. Considering the ravages of the disease, the ineffectiveness of treatment in most cases and the toll it exacts on our loved ones, a voluntary departure from life may be contemplated by many sufferers. In fact almost 25 per cent of dementias coexist with depression. If a patient with dementia talks about committing suicide, be warned, he or she may carry it through.

As with any chronic disease the pain of dementia needs a lot of support. This is someone we love dearly; we must walk with him even when he wanders on, lost to us in the second, uncaring childhood.